About Us

MTM-CNM Family Connection, Inc is a non-profit charitable organization with a mission to connect families affected by Myotubular Myopathy (MTM) and/or Centronuclear Myopathy (CNM) to resources, research, and relationships within the MTM-CNM community. This organization was officially formed as a charitable corporation under chapter 180 of Massachusetts General Law in May of 2014. It has tax-exempt, public charity status under Section 501(c)(3) of the Internal Revenue Code, as recognized by the Internal Revenue Service (EIN: 38-3932529). A primary activity of MTM-CNM Family Connection, Inc is to plan and host a bi-annual Family Conference in the United States.

A grounding principle that MTM-CNM Family Connection, Inc promotes is bringing the MTM-CNM Family community together to share one another's strengths, skills, and abilities. If you'd like to be involved, we want to hear from you! Those of you that attended the past conferences got to experience so many of our family members bringing their gifts and talents to life in service to MTM-CNM families. Community service and empowerment, through sharing one another strengths, is very important to our mission. Please contact us to let us know how you might like to help - there is always much work to be done!

Our Leadership Team

The core leadership team of MTM-CNM Family Connection, Inc is made up of parents of children with MTM-CNM, and includes:

Erin Ward, President

Marie Wood, Vice-President

Mark Ward, Treasurer

Shannon Mashinchi, Clerk

Mark, Erin, and son Will

We all serve on the Board of Directors and all of our time and efforts are on a completely voluntary basis with no compensation. We have no paid employees or contractors.

Marie and her family - David, Blaise, Lucian, Reid, and Paley

Shannon, Javad, and David

Our Mission

1) With a deep awareness of the unique challenges in having or caring for someone with MTM-CNM, we seek to provide an enjoyable and enriching family-oriented conference experience that educates and unites the individuals and families affected by Myotubular & Centronuclear Myopathy in supportive friendships and life-enhancing networking opportunities. 2) With hearts full of hope for the future, we seek to connect families in person to the top researchers in potential MTM-CNM treatments in order to get them acquainted with the latest advances in medicine and assistive technology and to get families signed in and registered in the various studies that will push research forward.

Frequently Asked Questions regarding the creation of our organization

MTM-CNM Family Connection, Inc is a new organization created in 2014 by the planning team and hosts of the US MTM-CNM Family Conference. Following the 2013 Family Conference, it was clear to our planning team that the time had come in our journey to formalize the grassroots efforts of our team and develop a non-profit dedicated to the mission of connecting MTM-CNM families to resources, research and relationships. We are thrilled to share with you the work that has been done to make this happen and hopefully answer any questions you may have about our new organization and the future of the Family Conference.

Why a New Formal Organization?Back in 2008, as the first US MTM-CNM Family Conference was being planned by an independent team of family members, there was no formal organization that was focused on bringing all families and researchers in the MTM-CNM community together in one place. And so the team set out to create the first Family Conference in 2009 in Houston, Texas. The Myotubular Myopathy Resource Group (MTMRG), created by the Scoggin family to provide online information and resources for families, was gracious to officially sponsor the Conference activities by allowing conference funds to be raised under their nonprofit to support the conference. We are so grateful for the years of support from Gary and Pam Scoggin, and their continued support as we make this transition. As we have now successfully held three bi-annual conferences (2009, 2011, 2013), it is time in our community's journey to formalize this grassroots team of families and our mission. The experience of the first three Conferences has demonstrated the power and importance of building a supportive network of families-helping-families, ongoing sharing of life-enhancing resources, and direct interaction with the researchers and medical professionals from around the globe who are striving to change the world for our loved ones.

Who Are You Affiliated With?We are an independent organization with no formal affiliations with any other entity.We do aim to continue our collaboration with other fabulous MTM-CNM family and community organizations and resources as we have through our previous Family Conferences.

Do You Have Any Financial Interests?All members operate on a volunteer basis for the cause and receive no compensation. Our corporation and our Board of Directors do not hold any financial interest in any of the research programs or biotech companies related to MTM-CNM or other diseases. Mark Ward (Treasurer & Director) is an employee of Philips, which has provided financial support for the Conference in the past and manufactures and markets medical equipment, some of which may be used in care and treatment of individuals with MTM-CNM. There is no direct benefit or connection, financial or otherwise, between Mr. Ward's employment at Philips and his involvement in MTM-CNM Family Connection, Inc.

Will You Be Fundraising Differently?We will be exploring a variety of fundraising options, and hope that many of you will help us in this regard - this is truly a community effort! If you are interested in donating to a cause that is dedicated to bringing MTM & CNM families together, uniting families with lead researchers and medical professionals in our field, providing supportive resources, and building life-enhancing relationships, please consider supporting our organization. We are dedicated to good stewardship and minimizing our costs of operations so that the funds raised will be used primarily for the direct costs of putting on the Conference and activities that directly further our mission and benefit families. Conference-related fundraising will no longer go through the MTMRG. MTM-CNM Family Connection, Inc is organized as a non-profit corporation and has tax-exempt, public charity status under Section 501(c)(3) of the Internal Revenue Code, as recognized by the Internal Revenue Service. Donations are tax-deductible, subject to applicable laws and IRS regulations.

How is this Different from the Past?The mission of MTM-CNM Family Connection Inc is not much different from the grassroots efforts that have been ongoing since the first Family Conference in 2009 to bring families together with lead researchers in the field to be better informed of ongoing research, collaborate together to improve efforts, and provide opportunities for direct participation. This organization will also continue to build on the family networking and building of supportive relationships that began after the 2009 Conference through social media support and through sharing of resources to improve the lives of our loved ones affected by MTM & CNM. Becoming an independent 501(c)(3) corporation allows us to formally organize our infrastructure, better manage our resources, collect tax-deductible donations, and help sustain this supportive resource for our community over time.

What does this mean for the next Conference?It is our hope that our new organization will allow us to create many more successful Conferences and expand our ability to bring families together with one another and lead researchers and medical professionals within our community, as well as ongoing support of resources and relationships. Our next conference will be held the summer of 2015.**UPDATE** 2015 was awesome, the fun continues in 2017

Where will the 2015 Conference be held? Can it be held in a city near me?Choosing the location of the bi-annual conference is a task we take very seriously. There are several factors that influence the decision, and the team is weighing options carefully. We realize that the sooner a location and date are announced, the sooner everyone can start to plan their own schedules and travel arrangements. While we are not quite ready to announce specifics yet, it is not too early for all families to start making initial financial and logistical preparations to ensure they don't miss out on the awesome experience in the summer of 2015!**UPDATE** See you in Chicago in July 2015!**UPDATE 2** See y'all in Nashville in July 2017!

Will You Be Doing Other Activities Besides the Conference?Following the 2009 Conference, our MTM-CNM family community was strengthened and unified through ongoing social media networking, sharing of resources and information about daily life and caring for our loved ones, building and maintaining supportive relationships, and celebrating and honoring our loved ones with MTM & CNM, both living and those who have gained their angel wings. That momentum to build community, and promote education and awareness, that grew out of our first US Family Conference is something that our organization has and will continue to nurture, grow, and expand. While our focus is on putting on another great Conference in 2015, we will always be open to exploring additional ways to fulfill our mission.